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Seat at the Table

Power, Fear, Lack of Empathy

By | Advocate, Family man, Leader | 6 Comments

Photo of Ruth and Ruben van Leeuwen circa 1947

I was riding my trike this morning at 6:30. It was beautiful, dry, cool, few people out. My pathological optimism has escaped me.  I needed serenity following my recent MS infusion. I was hoping that I’d find clarity for the post I started yesterday about health data, health research, learning, and adjusting. I’m underwhelmed by our collective ability to learn and change based on experience and evidence. Where do I go with this germ of a post?

But no, I’m getting more and more agitated with every pedal. First, immigration and refugees. Then Brett Kavanaugh’s Supreme Court nomination. I can’t shake it. No serenity, no nifty pearl for my post. Just escalating sickened outrage about power, fear, lack of empathy and its effect on our community well-being. Deep breaths, mindful meditation have no effect.

My parents, both Holocaust survivors, were not religious. But I heard Love thy neighbor as thyself often and I watched them live it.  My mom, when she finally began to speak about her experiences in hiding, emphasized her gratitude to the people who hid her at great risk to themselves. She would say, I wasn’t brave, they were.  I just survived. They were the heroes. The Trump administration is determined to wipe out immigration – both legal and illegal. It makes no sense to me. It flies in the face of decency, empathy, common sense, and evidence. Since this is a healthcare blog dedicated to empowering people as they travel toward best health, I’ll stick to that lens. Most people want to live the best life possible with their families, contributing something to their communities. This I believe. If they can’t be safe in the home, they want to move if they are able. If they can’t be safe in their countries, they want to emigrate. Even in the face of great risk. We in the US are fortunate.

Give me your tired, your poor, Your huddled masses yearning to breathe free, The wretched refuse of your teeming shore, Send these, the homeless, tempest-tost to me, I lift my lamp beside the golden door!

So we do the work to assimilate! Is that so hard? It’s moral, ethical, empathetic, right. Practically, the fastest growing occupations in the US are home health aides, personal care assistants, medical assistants, software developers, nursing assistants, and registered nurses. All positions facing shortages.  All positions affecting our communities’ health. Who do we think is going to take care of us and develop tools that support our care as we age? Immigrants.

Second, Brett Kavanaugh’s Supreme Court nomination in the face of accusations of sexual assault. Again, outrage about power, fear, lack of empathy and its effect on our community well-being. Our Senate Judiciary consists of old white men without lived experience of assault and powerlessness (or they haven’t come out yet). Maybe the most powerful office in the country with a lifetime appointment affecting the wellbeing of all of us.

OK, other people can opine on these topics better than I can.

For me, the central feature is power – the imbalance of power. Those in power want to stay in power at all costs. I think it’s a human condition of the ages. Evidence, curiosity, empathy, have little role. We know that this imbalance of power is evident in our healthcare business practices and our healthcare decision-making. Fortunately, I still have a reservoir of pathological optimism. My parents lived through the Holocaust, the country survived the Vietnam experience. I believe that there are cycles of learning and relearning, and relearning again. I believe that the response to power imbalance is to get more people with lived experience and less power a seat at the table, especially the tables of governance.  For immigration and our government, our power is in the ballot box. Elect people with lived experience who grew up farther from power and wealth. Please vote and help your neighbor register to vote.  And I’ll get back to my advocacy to bring more people with lived experience to the tables of governance, design, operations, and learning in healthcare delivery, business, research, and technology.

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A Seat at the Table. Now What?

By | Advocate, Researcher | One Comment

Walking in the door, I look around me. Who are these people? What am I doing here? I’m not an academic. I’m don’t represent a national advocacy organization, a health system, or insurance company. I don’t work for pharma. I don’t represent an EHR vendor or software startup. I’m not a techie. I’m not, I’m not, I’m not. I’m just little Danny van Leeuwen. Yet, I’m finding myself sitting at several tables – research, data privacy and access, measurement, design, palliative care, behavioral health, policy – as a patient/caregiver scholar or stakeholder or activist. It’s been a heady, nerve-wracking, sober, and awkward process.

A core principle of my advocacy: People at the center of care (patients, direct care clinicians, and those that support them) need to sit at the tables of governance, design, operations, and learning in all aspects of healthcare research, delivery, and policy making.

Thank goodness I salivate standing in front of the complex Tower of Babel. In a weird way, I welcome the nonsensical business puzzle of sick care. Every tribe represented around the tables has a different language, all, apparently, in English. My first tasks are clarifying purpose and audience, inventory related efforts to-date, and figure out the one thing above all else that I want to accomplish at this table.  Whenever I don’t understand, I ask. What is an artifact? What do you mean by patient-centered? Who pays? Who cares? I propose definitions in my own words, words I think lay people might get. I tell my colleagues that I need to be able to write about it for you.

Next, I develop relationships and build trust. It’ll surprise you to know I’m an extrovert (Myers-Briggs ENFP if you go that way), so it’s natural for me to build relationships. The best way for me to build trust is to take on tasks and deliver on time.  And listen more than I talk. That’s work for me since I like the sound of my own voice. I prepare, do my homework, read everything provided in advance. Again, I bring one goal to accomplish in the upcoming meeting. When I feel small and intimidated, I think of the mouse, Jerry, of Tom and Jerry cartoons. (Does that date me?) I lean into the feeling of intimidation.

Broadly, I look for more opportunities to bring other people at the center of care to this and subsequent tables. I set my expectations low, so I can be delighted when they’re exceeded. We don’t have to hit it out of the park. I relish any humor and irony I stumble upon. It’s a fertile field. If I’m feeling crabby or hopeless (more than the normal anger at our sorry state of healthcare delivery), I back up and take a break. Play music, meditate, exercise, spend time with family, space out. Self-care first. If I feel disrespected, I’m out ‘a there.

Mostly, it’s fun, fun, fun. People care, people want things to be better, people want to accomplish something. People have hope. I hope we’re moving a battleship three degrees.  I know it needs to turn at least 45. Play the long game even if you’re a short-timer.

Photo by Ken Treloar on Unsplash

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